COVID-19: SUPPORTING PEOPLE IN THE LAST WEEKS OF LIFE

If a person’s condition deteriorates, and critical care treatment is not wanted or is not appropriate (https://www.nice.org.uk/guidance/ng159), people may choose to be cared for at home, in a care home, a community hospital or acute hospital. Transfer to the hospice may be an option, although bed numbers are limited. This guidance sets out what will help people to remain or return home, or be cared for in another setting, as safely and comfortably as possible.

A downloadable version of the below information is available here

COMMUNICATION

If prognosis is uncertain: explain gently that they are so sick that they may die. If expected to die within hours or days: explain that they are near the end of their life, they are dying, and they may be in their last hours or days.

https://www.realtalktraining.co.uk/covid19-evidence-based-advice-difficult-conversations gives useful guidance about how to do this well.
https://www.ahsnnetwork.com/helping-break-unwelcome-news https://www.vitaltalk.org/guides/covid-19-communication-skills/

Find out the person’s preferences and wishes. What’s important to them about their last days of life? Is it possible to support them with what really matters to them? This is often something non-medical.

What you can do to make conversations easier:

  • Have conversations as early as possible
  • Take your time – even though the situation may be fraught, and decisions may have to be made quickly, a good conversation for 1 minute will save time compared to 10 seconds of the wrong conversation

Talk clearly without using jargon.

INFORMATION FOR FAMILIES AND CARERS 

What to expect in the last days and hours of life: https://www.hospiceuk.org/what-we-offer/clinical-and-care-support/what-to-expect.
Practical guidance: https://helixcentre.com/_content-img/projects/eolc-toolkit/Practical-Care-For-Dying-Person-Toolkit.pdf https://www.hospiceuk.org/docs/default-source/echo/covid-19-echo/covid-19_care-at-home_guide_final.pdf?sfvrsn=2.

EQUIPMENT

Consider what equipment would be helpful for the person and their family, e.g. inco pads, commode if well enough to transfer; hospital bed, pressure relieving mattress, slide sheets may also be helpful; contact the Single Point of Access. Anticipating the need for subcutaneous injections, the following may be needed: needles, syringes, butterfly or saf-T-intima and Tegaderm dressing, giving sets, sharps box.

Latest guidance on protective equipment: https://www.england.nhs.uk/coronavirus/publication/guidance-supply-use-of-ppe/

COMMUNITY DRUG CHART

Please prescribe medication on a community drug chart to enable district nurses to give them when needed. It is available to print out from https://intranet.poole.nhs.uk/uploads/medical/palliative/documents/ or on SystmOne. Guidance on medications below.

DNACPR

If critical care is not appropriate and the person is anticipated to die, it is extremely important that a DNACPR form is completed and given to them (or their family as appropriate). Decisions about resuscitation should only ever be made in discussion with an individual patient and their family in regard to their specific circumstances, and never applied to people simply due to their age, or because they are living with a disability.

SUPPORT – SEE CONTACT DETAILS BELOW

Families and communities may be able to provide much of the care needed, perhaps with additional support.

  • What are the person and family able to do for themselves?
  • What do they need help with?
  • Can friends or neighbours offer additional support?
  • Many communities have organised local community support
  • Local authorities and Age UK are coordinating voluntary support locally
  • District nurses, GPs and others in the primary care network

Hospices and palliative care services can offer further advice and support.

QUESTIONS, ADVICE, FURTHER SUPPORT

Palliative and end of life care teams are available for further advice or support, or if medication choices are needed beyond those suggested overleaf. Palliative care guidance (“the Green Book”) is available here: https://forestholmehospice.org.uk/clinical-guidance-and-resources/ These are unprecedented times. If you are struggling, please know that you are not alone. Take a moment. Find a colleague you can talk to. You may find the sections on “anticipating” and “grieving” helpful: www.vitaltalk.org.

SYMPTOM MANAGEMENT

Up to date guidance, including non-pharmacological management, is available at https://www.nice.org.uk/guidance/ng163/.  Please ensure the person has a supply of medication for the most commonly occurring symptoms seen in the dying phase associated with COVID-19, as well as water for injection if a syringe driver is needed.

For breathlessness, may be severe and associated with anxiety:

  • MORPHINE SULFATE 5mg orally as needed (2 hours or more between doses; with a laxative if able to take)
  • LORAZEPAM 0.5mg – 1mg oral / sublingually as needed up to four times daily (Genus brand dissolves easily)
  • MORPHINE SULFATE 5mg sc as needed (2 hours or more between doses)
  • MIDAZOLAM 5mg sc as needed (2 hours or more between doses; could also use buccal route, or rectal DIAZEPAM)

Long acting:

  • MORPHINE SULFATE sustained release 10mg 12 hourly orally, increased as needed OR
  • MORPHINE SULFATE 10mg -20mg by csci with MIDAZOLAM 10-20mg by csci OR
  • FENTANYL transdermal patches 12mcg/h – 25mcg/h (NB takes 18hrs to take effect; change every 72h, or 48h if fever)

For respiratory secretions:

  • GLYCOPYRRONIUM 200mcg sc PRN (maximum 1.2mg in 24h) OR HYOSCINE BUTYLBROMIDE 20mg sc PRN (maximum 120mg in 24h)  OR HYOSCINE HYDROBROMIDE  600mcg sc PRN (maximum 2.4mg in 24h) OR

Long acting:

  • GLYCOPYRRONIUM 1.2mg over 24h by csci OR HYOSCINE BUTYLBROMIDE 60-120mg over 24h by csci OR HYOSCINE HYDROBROMIDE 1.2-2.4mg over 24h by csci. SCOPODERM (hyoscine) patches 1mg/72h are an alternative if no syringe driver is available. Can use 2 or 3 patches simultaneously i.e. 2mg/72hr or 3mg/72hr in total.

For agitation / delirium (as well as non-pharmacological measures)

  • LEVOMEPROMAZINE 12.5mg orally or sc once or twice daily – 25mg orally or sc once daily (sedative*) OR
  • HALOPERIDOL 5mg orally or sc once or twice daily*.
  • Consider HALOPERIDOL 5 to 10mg* over 24h by csci OR LEVOMEPROMAZINE 12.5 to 50mg* over 24h csci. Higher doses may be given with specialist supervision.

For symptomatic fever: PARACETAMOL 500mg – 1g up to four times daily OR IBUPROFEN 400mg up to TDS (if able to take orally)

*Note that some of these doses are higher than usually recommended, to minimise avoidable distress and the need for additional sc medication.  Consider whether dose adjustments are needed for the individual.

CERTIFICATION, NOTIFICATION AND CARE AFTER DEATH

COVID-19 is notifiable to Public Health but does not need to be referred to the coroner as it is a natural cause of death. Up-to-date advice available: https://www.bma.org.uk/advice-and-support/covid-19/practical-guidance/covid-19-death-certification-and-cremation-during-the-coronavirus-pandemic and relating to care after death: www.gov.uk

CONTACT DETAILS

VOLUNTEERS AND COMMUNITY: helping with access to food and medication etc., especially for people who are isolated:

BCP Council “Together we Can” – Helpline 0300 123 7052 – available from 8am to 8pm 7 days a week.

Dorset council area: Age UK Helpline 01305 269444 email enquiries@ageuknswd.org.uk.

Dorset Council Helpline 01305 221000, 8am to 8pm, 7 days a week; email communityresponse@dorsetcouncil.gov.uk.

Community organisations offering support to their neighbours with befriending/shopping/prescriptions etc.  https://www.helpandkindness.co.uk/search/dorset/coronavirus

Red Cross: www.redcross.org.uk/get-help

Community nursing teams – via Single Point of Access: 03000 33 4000

Dorset Healthcare – dhc.cct@nhs.net – for community / palliative care teams to organise care at home

In addition to local advice lines below, GPs can also contact a palliative care doctor via Consultant Connect (Mon-Fri 9-5)

POOLE, WIMBORNE, PURBECK

Forest Holme Hospice 01202 448115 advice available 24/7 (NB for hospital inpatients please ring hospital palliative care team).

email: forest.holme@poole.nhs.uk web: https://forestholmehospice.org.uk/

Hospital palliative care team (Poole Hospital): ext 8102, bleep 0830, 0028; End of life care team: bleep 0575, 0820

https://intranet.poole.nhs.uk/index.php/medical-clinical-care-group/palliative-care

BOURNEMOUTH, CHRISTCHURCH, VERWOOD

Macmillan Unit: 01202 705470 or 07568 432215 advice available 24/7 www.macmillanlocal.org/the-macmillan-unit/

Hospital palliative care team (Bournemouth Hospital): 01202 726021 https://intranet.rbch.nhs.uk/index.php/palliative-care

NORTH, WEST AND SOUTH DORSET

Weldmar Hospicecare: 07713 511832 advice available 24/7 https://www.weld-hospice.org.uk/

Hospital palliative care team (Dorset County Hospital): 01305 255752

Dorset Integrated Care System – 28 April 2020 v3